For those of you who don’t know what Fibromyalgia is, simply put Fibromyalgia, aka fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.
In addition to chronicpain throughout my body, I am always tired. Sometimes I am so tired that my husband has to help me up the stairs and into bed.
Then, every day around 3:00 – give or take a half an hour – I have to try to live with fibro fog. It’s actually what it sounds like. In the late afternoons, it feels like someone has pulled a gauze bag over my head. I can still see out and I can hear voices, but everything is muted and fuzzy.
I can pay attention to what someone is saying, but don’t quite understand it. And within minutes I’d forgotten what we talked about. I feel confused and “out of it.”
One of the worst changes I have gone through with fibromyalgia is becoming less intelligent. No one seems to talk about this but it’s true. I used to be really smart. I was the major caregiver of our two children ages 5 and 2 with one of them already exhibiting signs of mental illness.
I started a business with no college degree or money and grew it until it was quite successful. I volunteered in our community acting as an election official in various elections. I was the executive director of a community-wide outdoor celebration that attracted about 20,000 people each year.
Today, I would not be able to keep track of all the details, and I would not have the energy to juggle all the people, business needs, and community expectations that surrounded me.
As far as recognizing I had FM – I didn’t. I got sick in 1989 and although I saw numerous doctors – some of whom were specialists – no one could find anything specifically wrong.
Remember, even though FM had been written about in the medical literature for centuries, it was a new medical disorder in 1980. And for that decade, and even longer, it was not accepted as a “true” disorder. Because 98% of FM sufferers are women, many patients were referred to mental health professionals.
Finally, in 1996, I went to see a new rheumatologist. He spent a long time examining me and asking questions. When he finished he said, “You have fibromyalgia.” I had never heard of it. He gave me a brochure and said,
“The good news is, it won’t kill you.”
Wait, what?
No, it won’t kill you; it’s a life sentence with no chance of parole.
I’ve had 30 years to make my peace with fibromyalgia, and I don’t let the various symptoms upset me or cause depression. I don’t talk about it very much anymore. I’ve come to the conclusion that this pain and fatigue aren’t a symptom of something wrong with me that needs to be fixed. The pain and fatigue have shaped the person I am. They are as much a part of me as my heart and lungs are.
The short-term memory loss, insomnia, lack of appetite, Irritable Bowel Syndrome, and whatever else I can’t think of at this minute (it’s 3:03 pm and soon the fibro fog will come) define me as much as the color of my eyes and my smile.
I don’t complain about FM symptoms anymore. My husband is doing his best to take care of me and he doesn’t need to put up with a bunch of complaining and whining. If I need to cry about a missed opportunity, I do it when I’m alone.
Fibromyalgia is not only affecting me. My husband, family, and friends are experiencing it second hand through how I act and what I say. Fibromyalgia is miserable. The people around me have their own problems; they don’t need to take on any of mine.
Fibromyalgia did NOT ruin my life, but when I tell you what it has cost me thus far, you will think I’m mistaken.
I can no longer exercise in the ways I like, no rollerblading, no horseback riding, no running,
I can no longer make a date with friends and promise to be there. Fibro makes it hard to plan ahead.
I can’t go for long car rides or road trips because I can’t sit in one position for too long.
I have to take meds for pain but they only work on the pain NOT related to the Fibro, so I’m still in pain.
And the worst thing of all, after being able to proudly say that I am a nurse, I can no longer legally say it. I went on full disability in 2015 because just remembering a doctor’s order was impossible, or a diagnosis, or a name!
Maybe it’s an inner me, I really don’t know, I just try not to dwell on the bad stuff, and keep looking for the good. There is a TON of good out there!
I CAN NOT let something RUIN my life, not something like Fibromyalgia.
I realize that Fibromyalgia doesn’t affect everyone the same way. I don’t think I suffer as much as some people do.
Having said that, there are things that I have done that make it better. When I was first diagnosed in 1987, I started exercising, at the gym and walking. It took care of almost all my pain. 12 or so years later, the chronic fatigue kicked in and everything got worse. I took naproxen, mostly. It was all I could do to do my job and get home.
Now since I’ve retired, I thought things would get better without job stress, but not! It’s kind of worse. More and more naproxen. When tramadol became available, I used it sparingly. If I took 50 mg before bed, I slept well and the next morning I felt that it reset my brain, somehow, and I felt pretty good for a while until it got worse again.
When I first heard of CBD oil about 4 years ago, I started taking it and it really helped a lot. It helps with sleep problems, but not enough. A couple of years ago I got some street cannabis edibles, and it worked so well that I knew I had to do some research.
Last year when medical marijuana became legal in my state, I researched different strains and found ones that worked better. When you buy edibles, you don’t always know which strain is in the product. Therefore, I always buy a 1/8 package of “flowers” and make my own special chocolate.
I only take it an hour or so before bed. I get a really good night’s sleep, wake up refreshed, have no side effects, and have more energy. I keep tramadol around for really bad days, mostly caused by changes in weather. I found that less cannabis is more, and have no interest in getting high. One flower lasts me a couple of months.
Bottom line — if you can exercise, do it, but don’t overdo it. Work with CBD oil, tramadol, naproxen, and medical cannabis if it’s available to you. Try not to get stressed, if you can.
Good luck!
Just a little update here to clear something up ….. I don’t take naproxen regularly, now. It’s already given me heartburn and GERD issues. The only things I currently take every day are CBD oil and cannabis, with tramadol and naproxen as needed.
Bless your heart! I would say to you to get a notebook dedicated to writing down everything you eat and how you are feeling every day. Write down your pain levels and fatigue levels and how your food affects you. If any foods cause you to have abdominal pain eliminate them from your diet. Additionally, stop all sugar except in the form of fresh whole organic fruit.
This is because I believe that fibromyalgia is caused by a disorder of the gut biome. This means that you’ve taken so many antibiotics they have stripped the normal bacteria out of your intestinal tract and you now have abnormal bacteria in your gut. You can put them back in by eating probiotics. You can eat raw cheese in moderation, but not pasteurized.
The most available raw cheeses are imported Parmesan, Romano, and swiss cheeses. They should be marked made with unpasteurized milk. Raw cheeses have been fermented and will add good bacteria to your diet but pasteurized dairy products will add inflammation to your body. You should only eat grass-fed butter. Kerry Butter from Ireland is the best known.
You can eat live fermented foods like Bubbies pickles, or Kombucha, or go to your local farmers market and see if anyone is selling live fermented pickles. You want the kind that is only pickled in salt and water, or in whey and has to be refrigerated. You don’t want pickles in vinegar. Other fermented foods are miso (if you can tolerate soy), which is fermented soy paste, and can be used to make yummy soups.
Put a spoonful in a small pot of boiling water, and add green onion, minced ginger, garlic, and a few cut-up veggies. You can also add cut-up firm tofu and or small pieces of meat. Cook until the veggies are barely tender, just a minute or two.
If you are thinking that this doesn’t sound like your normal fast-food diet, you would be right. It will be a new way of thinking for both you and your Mom, and a new way of shopping. You need to have as much organic food as possible, and as little pre-processed and fast food as possible. When you start removing junk from your diet your body will start to tell you when you’re feeding it the right things.
Your pain will decrease and your energy will increase. Say goodbye to chips and crackers and desserts except for fresh fruits. Say goodbye to pizza, hamburgers, and fries. Try eating homemade soups and stews and grilled fish with herbs on, and big salads and lots of veggies.
Make your own salad dressings using fresh garlic, olive oil, lemons, a little mustard, or some herbs. Mince, then mash the garlic with salt, add freshly ground pepper, the juice of 2 lemons, and twice the amount of oil to the lemon juice. stir in a little dijon mustard to taste. You won’t want bottled salad dressing after you’ve tried this!
Make bone broths with organic animal bones. Chicken, beef, and pork all make wonderful broths. Your goal should be to get as much gelatin in the broth as possible, so use the feet. Julia Child’s recipe is the best. The broth will heal your gut and you should eat some every day.
Master Recipe For Basic Stock Julia Child) Recipe – Genius Kitchen You can find chicken feet at farmer’s markets and Chinese grocery stores. And good news, you can eat chocolate, but just a little, and it needs to be at least 70%.
OK, enough food! Exercise if you can. If you’re too tired or too much in pain, then don’t. One of the things people don’t ever understand is how tired you are and how much you hurt. You can’t explain. Don’t even try, unless you use the pain scale, which is a method doctors and nurses use to quantify pain. 1 is no pain and 10 is screaming out loud pain.
So figure out where you are between one and 10 and that will help you to track it. Write that in your notebook every day and show it to people when they tell you to stop being lazy. My rule of thumb is that I can work through it up to level 4.
Level 5 and above is too much pain to be working or exercising through, although I can do seated work at 5–6. If you must take pain medicine, use an NSAID, like Ibuprofen or Naproxen. Don’t take Tylenol. It’s very liver toxic and it’s a useless medicine. It doesn’t touch the pain.
Try not to take pain medicines, because they will ask how you are feeling, and what your diet is doing to you.
Get your doctor to do a nutrition test on you. It’s a blood test that checks your nutrition levels. It’s very common for people with fibromyalgia to be short on magnesium, potassium, and B vitamins, for example. It’s also common to have hypothyroid of one sort or another. You need to test both for T4 and T3, and if you’re low on any of these, then you need to take supplements for them.
Find stuff that’s quiet and constructive that you like to do. Get off your screens if you have any energy. Learn to knit. Paint or find other art projects to do. Make jewelry. Be productive and happy as much as you can. On good days, go to school and try and keep up.
This disease will not change who you are. You are still you, and you are important and lovable. Be good to yourself, and don’t beat yourself up over this, because it’s not your fault. It’s modern life, sad to say.
I always find it helpful to soak in a hot Epsom salt bath (the calm scent one or relax one), it helps the aching body as the water cools stay as long as you can handle it and then pat dry do not rinse.
There are periods when I’m cold and can’t warm up a hot bath or shower…. Then there are periods I’m hot and can’t cool down- yep as cold of a shower as I can stand.
I also put on calm music to relax me.
I do not like taking a lot of medication so I try not to take much at all but in the past a small 5 mg of Flexeril before bed when my muscles won’t stop spasming. I say in the past because it’s been over 4 months since I’ve taken one.
I have recently started a small dose of CBD oil at bedtime and have found great relief. The pain that is left is from my arthritis and that is soothed through a CBD cream, neither of the products has THC in it. Since I began taking it at bedtime, I’m asleep within 30 min and I sleep through the night, waking rested and ready to face the day. I have been able to sweep, mop, and vacuum my house in one day versus having to spread it out over 4 days…
My skin doesn’t hurt to touch anymore so my husband has been able to hug me and hold me more, which is a great thing. I feel greater than I have in years.
Make yourself a nightly routine and do it every night at the same time, oh and sometimes I drink hot tea before bed.
